AIDSWatch 2001: I Am Why You Should Care About AIDS

A note from TheBody.com: The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

In my last editorial, I mentioned I had the opportunity to attend AIDSWatch 2001 in Washington last May. The National Association of People With AIDS sponsors this annual gathering of about 200 folks from around the country. It is designed to provide people living with HIV/AIDS, their family members, and supporters and advocates a structured opportunity to engage in meaningful dialogue with their members of Congress for adequate funding for HIV/AIDS programs.

I was fortunate enough to have George Burgess (a long-time AIDS Survival Project volunteer in Atlanta) and Terri Wilder (the program manager of THRIVE! Weekend) join me on this journey to D.C. Each of us had participated at the state-level with the AIDS Drug Assistance Program (ADAP) Task Force and the training provided by AIDS Survival Project. This provided us with a firm foundation to build upon as we learned how to advocate on a national level.

I have become more comfortable approaching my State legislators to ask them to fully fund ADAP. However, it has not always been that way. As we flew to Washington, I had some concern I might become nervous as I spoke with the people from the offices of Georgia Senators Zell Miller and Max Cleland as well as Georgia Representatives Cynthia McKinney, John Lewis and Bob Barr. My friend Terri made a comment that caused me to pause and think. She said, "I just decided that I was going to talk to these folks just as I am talking with you." Her comment reminded me of the old saying, "Plain talk is easily understood." That is what AIDSWatch (and most advocacy, I am discovering) is all about -- plain talk.

Some of us had concerns about remembering all the numbers and statistics as well as having to talk about everything from the Ryan White Care Act to HOPWA. These concerns were alleviated when we were told to just tell our own story. The theme, "I Am Why You Should Care About AIDS," was our commission. We were there to put a face on HIV/AIDS for our members of Congress. All the facts and figures were neatly organized in a folder to distribute to the staff persons with whom we met. Each meeting lasted no more than twenty minutes and surprisingly, most staff were attentive and asked questions.

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Our most unusual meeting was with Bob Barr's office. Not known for embracing the issue of HIV/AIDS, we expected to be greeted with latex gloves. Instead, we had a cordial meeting with Representative Barr's legislative assistant, Mr. English, who (without gloves or mask) listened and took copious notes. I would like to believe our visit had an impact on Representative Barr's view of AIDS but I doubt it. However, his office did see us and this was much more than we expected. As we were leaving this meeting, I asked Mr. English if he knew anyone who had died of AIDS. He replied, "No. I don't think so." My response to him was, "you will." Looking a little puzzled, he bid us goodbye and assured us he would discuss our meeting with the Congressman. Change often comes in small steps. Perhaps we made one baby step here.

During the opening day of AIDSWatch, the Regional Coordinator from Indiana, Kellie Casper inspired us with a speech she had been asked to make as we began our training. Kellie, an attractive, vivacious, intelligent thirty-something, mother and nurse had recently discovered that she was HIV-positive. Living in rural Indiana and discovering she did not have health insurance, she sought care at the nearest health department, an hour from her home. She had been told about several "wonderful programs" including care coordination. The only problem, she discovered, was she could not access these programs because the AIDS service organization in that state had been closed and most of the Federal and State funds for HIV care had been used up. There was no money for new clients. Period.

Instead of giving up, Kellie got mad and via the Internet found out about NAPWA and AIDSWatch. She contacted Jean-Michel Brevel and became the Regional Coordinator for Indiana. One woman -- one voice. Kellie will make change happen in Indiana. She is one of my heroes now.

As she wrapped up her speech, we came out of our chairs -- many of us in tears -- and gave her a standing ovation. We were inspired to get back in the fight for an end to a holocaust that has somehow become acceptable to too many in our time. These were her closing words:

"I wait, watch and worry . . . wondering when my government will exhibit an act of courage and fully fund research, prevention, treatment, minority AIDS issues, housing for people with AIDS and global AIDS initiatives. I think if the United States does not step forward as a global leader in response to this pandemic there will come a time in the future when the world looks back and wonders why everything possible wasn't done to stop this holocaust!

"And so we march on, if there is not a way, we make a way . . . and above all, that is my intention, to somehow be a part of the cog that makes a way for people who are infected and affected by HIV/AIDS."

We need more folks like Kellie.

A note from TheBody.com: The field of medicine is constantly evolving. As a result, parts of this article may be outdated. Please keep this in mind, and be sure to visit other parts of our site for more recent information!

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